Next week Rylie will have her 100-day post-transplant blood tests and doctor consults. On Thursday, Rylie will be put under anesthesia for several tests and procedures: lumbar puncture, CT scan of abdomen, new ear tubes (her current ones are plugged), and probably an umbilical hernia repair. We're still planning on scooting out of town on August 10! It'll be so nice to be close to our Colorado family and friends and to see the Rocky Mountains again.
Friday, August 1, 2008
Day +86
It has been a quiet week. Lyle traveled for work to Michigan on Tuesday and Wednesday, and Rylie had her normal clinic appointments and therapies. She is making slow improvements on eating, but not even close to enough to cut down the IV nutrition. I've been melting dairy-free butter on her cereal and adding olive oil to her baby food, but that is apparently a huge turn-off for Rylie's taste buds. If Rylie doesn't make a turn for the better soon, we know that she'll need to get a feeding tube put in her nostril that goes down to her tummy until she is ready to eat. The IV nutrition isn't good on her GI track since it is not working much without food intake. Everyone, please send Rylie hunger vibes. EAT, EAT, EAT! (And no, Rylie doesn't even like ice cream. And have you ever heard of a toddler who won't drink juice? Sigh!!!)
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Hi Guys!
I know you've probably tried everything, but I thought I'd throw in my two cents.
Lauren wanted salty things as opposed to sweet. In fact it was nearly a year before I could get her to touch ice cream! One thing she loved was lime flavored tortilla chips (tostitos). She also liked french fries. Lauren never touched baby food again post transplant (I ended up giving tons of it away to other families at the RMH). Im trying to remember what al she would eat... barbque chips, ranch dressing, salted sesame sticks, applejacks, and the gerber veggie puffs (of course with those I started by sticking one to my tounge and make funny faces and she would wan to copy me... then she started to like them).
Don't think my rambling means I don't think you are doing everything you can... I just wanted to tell you what worked for us. I'm sure she'll be eating in no time!
Still, Lauren was drinking 6 bottles a day when we came home.. and eating little. It still suprises me today when I look over and see a clean plate and hear "More please!". It will happen... I promise!
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